Friday, April 22, 2011

No End in Sight

It had been over a year since his last retch when Collin started retching from poop issues back in January. Things calmed down somewhat after that, but we were still having spells of retching fairly regularly. Then he got the respiratory virus and the drainage and sore throat really sent him over the edge. Ever since then, things have been getting worse and worse. Collin is now retching every time he poops (which is a few times a day), every time he needs to burp, every time he chokes on spit, and lots of unidentifiable times in between.

Retching recap for those who don't know the history or who can't see how something like 'retching' would be hard: The point of the Nissen wrap Collin got at 3 weeks old is to prevent reflux of any kind, including acid reflux, vomiting, and even burping. So, every time Collin needs to do any of these things, his stomach won't let anything out and he instead tries to throw it up. But he can't do that either, so the result is a loud, violent, kind of disturbing dry heave sound. The retch leaves him unable to catch his breath, so if he has several in a row, his face starts to turn blue. One of the side effects of a Nissen is that in some people, it seems to cause a much more sensitive gag reflex. As I said, we hadn't seen this side effect in a long time but the prolonged period of retching seems to have brought it out. So whenever Collin chokes, whenever he feels spit or food in the back of his throat that feels gross, whenever he has just finished retching and is anxious about retching again, he retches.

Think about how awful and stressful it is when someone has a stomach bug in your house and you have a good idea of what it's been like here for the past three weeks (although we don't have to worry about it being contagious). With a virus, you at least know what is causing your symptoms and that it will end soon. The mental exhaustion from continually trying to figure out what's going on with Collin and how to stop it is almost as hard as constantly jumping out of our skin at the sound of a retch, leaping up, running, venting (burping, etc. from his g-tube), and trying to make him catch his breath. My adrenaline level, which has already been running high for the past couple of years, has been through the roof. It's also hard because we feel stuck at home when things are this bad. It is extremely unnerving and scary to witness a retching episode even when you're used to it, so when it happens around other people or (the worst) in public, there's an extra element of stress involved.

Things have gotten so bad over the last couple of days that we've had to cancel everything to hunker down at home and manage the retching. This morning, Kyle and I sat down and wrote out lists and charts to try to think our way through the situation. We don't think he has a virus because of the duration of the retching and because he doesn't have any other symptoms. We don't think it's the growth hormone because he was already trending in this direction before he started the HGH. He's had every GI test available, with no resultant help or answers, and usually ends up in worse shape when he goes to the hospital, so it doesn't seem worth it to drag him out to the doctor. The most logical answer seems that the excess retching from the cold virus made his tummy and gag reflex super sensitive and neither have had a chance to go back to normal. So, we ended up deciding to slow Collin's feeding rate down to almost a drip to give his stomach a chance to rest and hopefully heal. We can't use Pedialyte, juice, or other 'sick foods' because of his ketogenic diet (the sugar would make his ketones drop and possibly trigger seizures), and we can't skip meals because it would likely send him into ketoacidosis (toxic state from too high ketones), so we have to stick with our standard blenderized meals. This plan seemed to be working this morning, but then he had a huge spell while I was writing this post.

So, Team Collin is a little run down this week. We know that it won't last forever and we'll figure something out eventually, but in the meanwhile, things are just hard and we're trying to take care of ourselves the best we can.


  1. Man, I thought the silence followed by the NACD Evaluation post meant things were going great. Stupid retching.

    Hope there is an end in sight and a light at the end of the tunnel.

  2. Same here! I hope the retching resolves soon!
    Sometimes hunkering down is necessary to recover, re-evaluate the plan of action, and resolve an even better plan going forward!
    I hope everyone comes out the other side of this retching episode even better!
    Love and hugs!